Discipline advice for PANS/PANDAS flare behaviors?

[Sirena]

Anyone have advice for helping to manage/deal with aggressive behaviors associated with PANS/PANDAS flares for 6 year old? How do you discipline?

 

Thanks,

Sirena

[dasu]

Ugh...we have dealth with this very same thing too, with kids the same age. Aggressive behavior, hitting, screaming and worse saying violent and gruesome things, and also inappropriate sexual behavior. We had to remove anything that could be a weapon, including knives, silverware, candles, belts, bats, balls, and any solid toy. Sometimes the behavior was an actual attempt to harm other times it was more of an attempt to scare.

 

One of the first signs of PANDAS onset for my kids is trouble with discipline, both the carrot and stick. Incentives are ignored. Discipline is ignored. The kids are simply unable to control much of their behavior; if they could, they would. That said, we have found that, during a flare, behavior is partly a function of environment. And we could take steps to control environment. We had to remove many stressors - asking kids to do schoolwork, housework etc, going out to stores, and sometimes not even going out of the house period. They watched movies and played video games constantly.

 

There are times that is not enough, and they need meds. I hated to do it but we used Risperdal when things got really ugly. They ate constantly and were somewhat less aggressive. But it sure beat restraining my son for hours on end.

[Mayzoo]

The great balancing act of this disorder is discerning what behaviours are within the control of our kids, and which ones are not. If the behaviour is not within their control (motor/vocal tics ect) then discipline is of no value.

 

My kiddo is older (13) and has never been aggressive, but I take away her ipad time or send her to her room (electronic free zone) when she refuses to obey, or throws things.

 

We are balancing many supplements and abx/anti-viral treatments that help with most of the behaviour issues. For us, anxiety (born of inflammation) is our greatest enemy.

[pr40]

look at the archive, there were several great threads on the issue. I think I remember that you need to figure out your way of dealing but the besics are the balance btw. A) there is no disciplining during the flare up and you cannot let behavior go unchecked. timeouts, relaxing in the room, is what we try. then, there is also punishment and revard, as mayzoo does, with watching and other privilidges.

[Sirena]

Thank you both. I was able to find some of the archived info too. Very helpful... I think this is just hitting me like a ton of bricks bc we already have a special needs daughter who we adopted at 22months and it's been non-stop therapies, self-education, stress and advocacy and just as she is comng out a winner, now I have this....which is clearly not going to be an easy fix. Ugh!

Sirena

[nicklemama]

This, in my mind, is the worst part of PANS. I could deal with the other stuff but the aggressive behavior made for a very stressful house. My son was very aggressive, angry and rageful, at times. Predicting those times was difficult in the beginning. As I better understand the. Nature of his OCD and rigid, inflexible thinking, I better avoided setting him off. Honestly,discipline was basically off the table when he was not dealing well with things. Taking away an iPad would have caused a major explosion. We just walked on eggshells until things passed. He was 5,6,7 at the time. I can't imagine how I could deal with that now at age 11. If the aggression is that bad, I highly recommend you make sure to rule out Lyme and co infections as the source of PANS. In the end, that is exactly what my son has and treatment has helped the tremendously.

[WorriedDADNMOM]

Amen to Dasu.......NOTHING.....AND I MEAN NOTHING except caving in works with pandas kiddos. But caving is not productive.

 

Amen to nicklemama too........Eggshells and rigid thinking are really the tough ones to deal with.

 

The biggest deal was:

 

All natural supplements for us have been huge to the point of not needing any ssri(which we considered) or CBT ....which we tried counseling......was not even needed. Are we perfect.....not yet, but everyday there is improvements. I think the whole vitamin and mineral deficiency thing for us was like giving the body everything it needs to do what it is supposed to do. Pandas/Pans is to kiddos as shrink wrap is to sponge or orbeez.......It just does not let the body do what is supposed to do.

 

As for discipline. Remaining calm and not pushing their buttons(as they really are tripwires) is huge. Redirection. A good book is the

Transforming the Difficult Child: The Nurtured Heart Approach--------google it.

 

I hope this helps!